‘When he needs me, he can reach out that cute little hand and mine will be right there, ready for him. Steady for him.’: Special needs mom shares ode to brave son with extra chromosome, ‘I hold his hands, but he holds my heart’

More Stories like:

“I hold his hands. He holds my heart.

Wyatt is turning 3 soon, and he is working so hard on walking. He can walk with his walker, but he prefers my hands. He started by grasping both of mine, tightly, and I let him guide me, where ever he wanted to go. Lately, he tends to reach for one of my hands instead of two, and he’s even started to let go and take some independent steps. He’s still working on balance and he is challenged by his low muscle tone. It’s hard for him but he wants, so badly, to walk on his own. I want it just as badly, for him. And I want him to know when he needs me, he can reach that cute little hand out and mine will be right there, ready for him. Steady for him. After all, that’s how our journey started…

Courtesy of Marya Ketchell

I hold his hands. He holds my heart.

I was weeks pregnant, after rounds of IVF, when my doctor called to say the probability of our baby having Down syndrome was 99%. ‘Your child may never walk or talk; he will never drive. This is an intellectual disability, and there will be health issues that come with it,’ she said. ‘But the baby’s okay?’ I asked. She paused, surprised, and said, ‘Yes.’ In the moment, it was all that mattered. We never saw her again. The next day, my husband and I went to a maternal fetal medicine doctor for the level 2 ultrasound that would, as best it could, confirm the results of the blood test. The doctor was kind, his words reassuring, but I don’t remember any of them because it was the first we time we saw our baby boy. There he was! His little hand, waving, reaching for us. That night, we named him Wyatt for warrior. Steel for strength. I rubbed my hands on my belly where I saw his hands earlier, and I told him I loved him, over and over.

I hold his hands. He holds my heart.

‘I’m just going to get the doctor,’ said the ultrasound technician. At this point in my pregnancy, she and I had familiar rhythm. I had been having weekly BPPs and NSTs for over a month because I had IUGR and restricted umbilical flow. We’d all chat (my husband never missed a test) and watch the screen and see Wyatt stretch out his hands toward us, and then we’d go home. This day was different. No matter how hard I stared at the screen, Wyatt’s hands didn’t move. The doctor came in, took a quick look and said, ‘We’re going to have this baby, and we’re going to have him now.’ The umbilical flow had stopped and we had to go to surgery immediately.

I was just over 35 weeks along and terrified – a huge team gathered: the surgeon, my doctor, the labor and delivery nurses, the anesthesiologist, and an entire team from the NICU, poised and ready to sweep Wyatt to safety as soon as he was born. ‘He might not cry,’ my doctor said, ‘You might not be able to hold him, there may not be time before he goes to the NICU.’ The world was spinning around me. ‘It’s going to be okay. He’s in the best hands,’ he added. But Wyatt did cry, and it was the best sound ever. And I did hold him, and kiss his head, and he grasped my finger in his tiny little hand. From the moment he was born, Wyatt defied expectations.

Courtesy of Marya Ketchell
Courtesy of Marya Ketchell

I hold his hands. He holds my heart.

We spent 67 days in the NICU, and for more than half of them, Wyatt was in an isolette. I wasn’t allowed to hold him for much of that time, because the isolette kept him safe. So, I would reach my hands into the holes on the sides of the clear box and hold his. I’d read him book after book and sing him song after song, his little hands in mine.

I’d spent so much of my pregnancy worrying about the unknowns, reading every bit of research, every book, every blog. I wanted, desperately, to learn. I was determined to know everything I could so I could help him in all possible ways. I joined all the groups I could find; I reached out to strangers who kindly answered my many questions, I met with doctors and specialists; I worried I wouldn’t be good enough for him. But as I held his tiny hands, through those tiny holes, I knew. Everything would be ok. We were perfect for each other.

Courtesy of Marya Ketchell
Courtesy of Marya Ketchell

I hold his hands. He holds my heart.

Wyatt has endured more in his almost-three years of life than most people ever will – open heart surgery, a rare neurological disorder, multiple hospitalizations, hearing and vision impairment, challenges with things we so easily take for granted – like eating, like walking, like talking. But he has also read books and played music and danced; he’s traveled, he’s crossed the finish line of the New York City marathon, twice. He’s gone swimming in oceans and rivers and lakes; he’s ridden bikes and horses, and just recently, he skied for the first time. He has been, and always will be, deeply loved. Wyatt’s (magical) extra chromosome has connected us to an incredible community of families. It has re-connected us with old friends and introduced us to new ones. It has made our family stronger, and most importantly, it makes him so perfectly him.

Courtesy of Elizabeth Griffin Photography
Courtesy of Marya Ketchell

Already in his little life, Wyatt has shattered ceilings, broken barriers. He has shown me, and us, and everyone who is lucky enough to know him, that you can do hard things. He does hard things every single day. He is the bravest person I know. Every step he takes is a mountain climbed, every word he signs or says is a dream realized, every milestone met, a prayer answered. And every grin he flashes is a treasure because in it, is courage and grit and grace.

His hands, bigger now, are getting stronger. In them, he holds my heart.”

Courtesy of Marya Ketchell
Courtesy of Marya Ketchell

This story was submitted to Love What Matters by Marya Ketchell of Portsmouth, NH. You can follow her journey on Instagram. Submit your own story here and be sure to subscribe to our free email newsletter for our best stories.

Read more stories like this:

‘Linda, I have news—please sit down.’ The delivery room was hush-hush. ‘She will be a burden to your family.’ Everyone was disgusted I wouldn’t abort her.’: Mom details emotional journey advocating for daughter with Down syndrome

‘You’re purposely starving your unborn child by not eating.’ My husband wasn’t allowed in the room for ultrasounds.’: Mom births baby with Down syndrome after hospital malpractice, ‘He is more loved because, not despite, his diagnosis’

‘I know it may not feel like it at first, but you were chosen to be a special needs parent for a reason.’: Mom to late son with Down syndrome urges ‘love them a little extra for me’

‘I said to my husband, ‘I think something is wrong with the baby.’ There was fluid in the back of his neck. ‘We need to admit you. Today.’: Mom says ‘Down syndrome is the best thing to ever happen to our family’

Help us show compassion is contagious. SHARE this story on Facebook with family and friends.

For our best love stories, subscribe to our free email newsletter: